Patients with FASD: Tips for Healthcare Providers

In the wake of the COVID-19 pandemic, frontline health care providers are working day and night to protect the health and safety of individuals all across Canada. We honor and respect their sacrifice and commitment to Canadians in this challenging time. This blog post provides a few tips to help frontline health care workers manage the specialized needs of individuals with FASD during COVID-19.

A hospital visit can be an overwhelming and stressful experience for individuals with FASD and their families. While families and caregivers often have strategies in place at home to help limit exposure to sensory information, the sights, sounds, and smells of a hospital or health care facility may be overwhelming for some individuals. A well-prepared, FASD-informed team of health care providers and administrators is essential in helping manage the stress and anxiety that individuals and families may experience and in ensuring that their visit to their health care provider runs smoothly.

Be prepared

When talking to patients or their caregivers over the phone, ask if there are any specialized supports or services your patients may need before they come in for evaluation or treatment.

If you are aware that a patient needs specialized supports, notify your treatment team before the patient arrives so that they are prepared and equipped to best support their patients.

Invest in ongoing training opportunities for your staff to ensure that they have the up-to-date knowledge and resources to best support every patient. For FASD specific training courses, check out the list of online learning programs that CanFASD provides.

If you have an FASD-informed team and FASD specific supports, advertise this information on your website to put caregivers at ease before they arrive.

Designate certain areas as quiet spaces and provide sensory accommodations in these locations. Be sure to clearly communicate where these services are.

Improve wait times

Wherever possible, try to decrease the wait time for individuals with neurodevelopmental disabilities and their families. Prolonged time spent in a sensory rich environment may trigger anxiety and challenging behaviours.

Whenever possible, move the individual and family to a quiet space to conduct an initial assessment and registration. Have them remain in this space while they wait to see a primary care physician.

If your hospital has resources like a therapist or psychologist in your ER department, use them to help manage anxiety and stress and provide some distraction for patients.

Be aware of the temperature of the examination or assessment rooms and provide blankets if necessary.

Involve the caregiver when working with children

Individuals with FASD are unique and have unique strengths and challenges. Caregivers know what works best for their child, so look to the caregiver for guidance and model your behaviour off theirs.

Ask the caregiver what techniques have worked during past medical visits and ask about any sensory sensitivity the patient may have (i.e., light, sound, touch, taste, smell, temperature) and what their preferred form of communication is.

Encourage caregivers to redirect, reassure, and restore calm if the situation is escalating.

Wherever possible, allow the primary caregiver to accompany their child during all assessments and treatments to mitigate anxiety.

Monitor the caregiver for signs of stress and anxiety and provide supports, such as coping strategies, if needed.

Ask the caregiver to help monitor and interpret pain responses. Some children with FASD have either low or high tolerance to pain and may respond unexpectedly to sensations such as heat or cold.

Improve your communication

When working with teens and adults with FASD, providers should ask patients directly about their preferences and needs to ensure these individuals are not excluded from their health care experience.

Make eye contact. For individuals with FASD, eye contact is essential to helping process verbal information. It helps them to focus on you directly and helps them to pick up nonverbal clues that add meaning to what you are saying.

Use exaggerated non-verbal communication strategies, including facial and body language, to help convey meaning.

When possible, use visual cues to help your patient better understand what you’re saying and to help trigger their memory.

When you’re talking to an individual with FASD about someone else, refer to that person by their name or their title (i.e., “the doctor” not “they”).

Make your point in 5 seconds (approximately 10 words).

Use expressive and receptive language when talking to individuals with FASD. Use simple and direct language and check for comprehension.

When giving instructions, reduce abstract speech and state exactly what the individual must do.

Provide written instructions as well as verbal information.

If you are interrupted while giving an instruction, repeat the instruction from the beginning.

Always wait a few seconds after you finish talking before moving onto another topic.

Seek information effectively

Ask the caregiver to provide a patient history, then confirm details or fill in gaps with the individual. Getting a complete patient history from an individual with FASD can be difficult because of issues with memory, cognition, and language.

Children with FASD sometimes have significant challenges with memory and may exaggerate or tell untrue stories as a result. Check the responses you get from the patient with their caregiver to ensure you are getting the full story.

You may need to ask multiple questions in order to understand a sequence of events, as individuals with FASD may not understand what information they need to share with medical professionals. If a doctor doesn’t ask, they likely won’t offer up the necessary information.

Ask direct questions that are framed around the answers you want (i.e. “Do you have a cough?” and “Do you have a fever?” rather than “How are you feeling today?”).

Be open and be positive

Many children and adults with FASD may experience extreme levels of fear entering a health care setting during COVID-19. Listen to their fears and address them in a positive way, emphasizing the safety measures that they can do to protect themselves. Be sure to repeat the safety measures multiple times throughout the visit.

Be positive and smile.

Use pictures to show what will happen next.

Follow up

Write down explicit instructions and/or provide visual step-by-step cues if there are next steps the patient has to take outside of the health care setting. Individuals with FASD are often challenged with memory, which makes verbal instructions difficult to remember.

Connect the individual or caregivers with local supports and resources that they can check in with when they have questions or are feeling stressed. Local FASD clinics and telehealth lines are good options.

If possible, follow up with the patient or caregiver to check in and remind them of the steps they should be taking to protect their health and the health of others.